Saturday, March 22, 2014

The Darker Side...

This has been the hardest post I've written. The emotions are hard to pin down and once pinned they come out pretty close to full force again. Things in this will be a little out of order of how things went but, after talking with Lea Ann and thinking about it, I wanted to write more about the emotions that were swirling around all through this journey. Please be aware that they are not pretty... they still being tears... To me and to Lea Ann. This will probably be longer than usual, too. As you may have figured out, I can get wordy, but in this case I think wordy might be better than being brief.I'll be trying to explain emotions and states of mind and what was going on in this old head of mine, at least to the best of my recollection. Not an easy thing to do. Lea Ann has given me some good parts of this as well. Once again, I've found out a few things I did not know or remember. I am starting to wonder if I don't remember because I truly don't, or if I have unconsciously blocked the memory out. Some of this is pretty far off-base for my usual personality and demeanor. I hope it will make sense to you. If not, please let me know and I will try again.They say there are five stages to the greif process. Denial, Anger, Bargaining, Depression and Acceptance. There are no truer words in my opinion. I can't say I hit them in that particular order, but I did hit everyone of them. Some harder than others, some simultaneously, and some more than once...

Denial... The reality of a cancer diagnosis is hard to face. No kidding, right? A lot of us see it as a death sentence. I know that is what I heard in my head. We don't hear the words, "You have cancer," we hear, "You are going to die." I thought I would have been ready to hear that after losing so many to cancer in my family. My father, both grandmothers, a grandfather (in part), my mother-in-law... Not to mention my mother is currently in hospice care (this is her 4th dance with the devil), and my father-in-law who is currently clear of the bladder cancer he had been diagnosed with. None of them were Esophageal Cancer, but they were a form of the beast. So with all that "experience" with cancer in my background I thought I would be ready to hear it. Was I? Oh HELL no. Not even a little bit. So what do we do when we hear this? One of the first things is deny, deny, deny. We're going to try to shut out the reality of the diagnosis and put together a different reality. One that isn't so scary. I'm a prime example of that. If you remember back to the first couple of blog posts, I was talking about Valley Fever and Gall Bladder issues and yeast infections. I clung to those like a Boa Constrictor. No way was I going to let go. Anything that would not point to cancer was a good thing. I was actually in denial before the diagnosis because I was so afraid of it, but who wouldn't be? With that much of it in their family already? I had been told by doctors that I had a better than 50% chance of having some form of cancer before I was 55 or 60. I was 49 when the diagnosis came. It just so happens that was the same age my father was when he was initially diagnosed. A very bad coincidence and one I constantly thought about. In fact, I still do. So anything that I could cling to that would shield me from the cancer diagnosis I used. After the diagnosis, I still held out hope that the diagnosis was wrong. I denied it to the ends of the Earth. MOST of this denial was internal though. Inside my head. Outwadly I was trying to show that I was not afraid and that it would all be OK and I said so. A lot. All the wile inside I was curled up in ball in the darkest corner of my mind. I have to hide. I have to make them see that the diagnosis is wrong. I do NOT have cancer, I can't. That, my friends, is a textbook definition of denial.Anger... This is the BIG one. This stage was hit hard, early and often. "Why me?"; "It's not fair!"; "How could this happen?" These are only a few of the angry questions that crossed my mind. Once I recognized that the denial wasn't working, I turned into a six foot, 300 pound ass (I can think of worse words, but I am sure you can come up with several of your own and every one of them would be right). Why? Because I was so angry (and scared - they go hand in hand in this situation). I became very difficult to deal with and even harder to care for. I was doing one of two things. Lashing out at everyone because of misplaced anger and envy of their health compared to mine, or I slid into the "I'm just going to sit and not talk and not smile and not do anything" mode.I got angry with myself too. How DARE my body betray me and get cancer! I am not ME anymore. I am cancer. That's how I viewed the situation. It was all consuming and absolutely infuriating. I was especially bad with family. I was short, rude, and downright mean. If you tried to get me out of that shell I would just lash out. Saying things like, "What difference does it make? I am going to die anyway! Just leave me alone!" Words like that actually drove Lea Ann out of the room crying on a few occasions. I was in my shell mode most of the time. Especially after I was taken out of ICU and put on the regular floor. There was an issue there the first night that totally changed me. Lea Ann says it was like night and day. I'll go into detail about that issue in a later post, but that's when I went into a shell within a shell. Not wanting to do ANYTHING. I wouldn't even hold my own male urinal when I was in the ICU bed. I stayed like that for a long time. This anger affects everyone. Lea Ann was angry, too. At the situation, at me, at the doctors... She called the surgeon a lying f-er when he was talking with us about my staging being a Stage III instead of Stage II or Stage I. I told him it was BS and several other things as well. Hurt and angry tears from both of us. These medical staffers, from top to bottom, have to have HUGELY thick skin and thank God they do. I'm told that after surgery when the lady from the American Cancer Society wanted to talk with me that I refused. I told her to get out of my room. I would not even talk to her on the phone. Lea Ann tried to convince me to talk to her. Absolutely not. How about talking to someone else about some support groups then? No! Maybe via email? No! NO NO NONONONO! The cancer has been cut out of me. It's gone! I don't want to talk about it anymore! Not with an American Cancer lady, not with some support group person, not via email, not with you... Not ANY way! It is gone and I want to forget it! Leave me alone! Go Away! I was talking to no one. Period. By this time she was going home at night most of the time. She was catching the brunt of my tirades and I do not blame her one bit for leaving. To her credit, she was always back the next day. This shell and anger game lasted even after I was discharged and went home. Lea Ann was getting scared. Nothing she was doing was working. She was afraid and running out of ideas. During this time, she had been in contact with the guys I have been best friends with since high school. They had told her flat out, "if it gets too bad or you need help or are scared and need extra support, all you have to do is call. We will be there." She called them. Less than a month later they were at our house. Two of the three "originals" (the ones I did the running with back then) and two others that we have inducted into the group. The only one missing wanted to be there but couldn't get off work. Lea Ann says when they showed up I became me again. The old me. Talking, smiling, laughing, and doing things, going out... I even fired up the BBQ grill. That was not fair to her and I know it hurt her. I hope some day to help heal that hurt. I believe that her calling the guys was the point where I started turning the corner. After they left there were still moments to be sure. More tears and arguing, but I was starting to LISTEN and understand what Lea Ann was saying and not just hear her talking. This was at around five or six months after surgery and I was also done with chemo and radiation. Soon after I feel was when I finally started to pull up and out of the funk. Luckily for me she and the family stayed with me and kept coming back and coming back and trying again and again. They took the hate and rage and anger and venom and lightning bolts... and the silence.. and just kept coming back for more. That's what true love and true family is. I include friends in that definition, too. Family is blood and marriage, but it also includes your friends. Your friends are the part of your family you get to choose. I've always called my closest friends brothers and sisters. I thank God for all of them every single day of my life. They were there and stayed there and I don't think I will ever be able to repay them. They were supporting and helping in every way, and I repaid them with loads of crap and worse. They will never know what they mean to me. Each and every one of them. I can never apologize enough for the hell I put them through.Bargaining... Dear God, if you get me out of this I promise to... Fill in the blank. Ever done that? I do. To be honest, I don't remember bargaining much during diagnosis and treatment. I was just too numb. Too isolated. Too scared to think that clearly. In order for me to bargain, I have to have at least a semi-clear mind. Otherwise I make silly, stupid, outlandish bargains and that doesn't sit right with me, so I have trained myself not to do it much. So this emotional stage wasn't all that prevalent throughout the journey. I bargained with Lea Ann a lot. I'll do the breathing exercises if you get me this or make me that. I'll walk if you let me sleep first... Most of which I would not follow through on until the listening started again.Depression... Another big one. This one tended to go hand-in-hand with anger. When a person retreats into their own head and are so entrenched there that they won't do anything to help themselves, that is depression. As you have read in this post, I had a lot of that. How bad was it? Before I was allowed to get up and use the toilet I had to use a little plastic hand-held urinal. I wouldn't hold it at first. I made Lea Ann do it. How pathetic is that? But she DID it every time I asked until she said something about it and it got me mad enough to just do it myself. Was I mad at her? I don't think so. I was mad at me, but she had to take the brunt of it. You have to realize that during all this Lea Ann was also hurting. In a literal and a very real physical sense. She has Rheumatoid Arthritis in both feet and osteoarthritis in several other areas. While I was in the hospital and for some time after, she was slacking off on taking care of herself so she could help me. I knew that... I saw that. But instead of thanking her and helping out more myself I just slid deeper. In certain ways I saw her strength as something that just made me the tiniest bug splattered on the windshield of life. How could she be so strong and courageous through all this with all that is going on with her? Why can't I be like that? I suck. Deeper into the isolation I went. She would bring me things and I would look at them and then just put them aside. Thanks... At home she would make me protein shakes with ice cream because I needed them for therapy and muscle recovery. I would rarely drink them then they would get watery and warm and I would complain. While still in the hospital I was doing SO little for the therapies, not using the breathing things and not walking, that they pushed hard to release me from that hospital and register me in a rehab hospital. I flat out refused. No discussion. I am not going. Rehab hospitals are for drug addicts and alcoholics and criminals I thought. I won't go there. Period. I got my way, got to go home and stayed in that shell. Just sit in the recliner with the oxygen hoses strung all over the house and do nothing. Not even shower. Just sit and stare at the TV. If the home healthcare nurse was there or the physical therapist I'd go through the motions, but as soon as they left so did I. I still walk along that cliff's edge sometimes. Occasionally I will feel myself sliding down and correct that as quick as I can. Back then I just slid down and down and down. I actually thought I would be worth more dead than being here because of insurance. It was my general state for quite a while, and again Lea Ann stayed right there by my side doing all she could. So did all of our kids and our nephew and family and friends, but Lea Ann was closest to the flame. This was the hardest thing for me to shake. It took all I had and all that Lea Ann and the family had too. It is the hardest on everyone, especially when combined with the anger part. Again, another part I am not proud of, but it happened and we got through it.Acceptance... I think that's where I am now. It's been one hell of a long road to get here. As I have told a few others, writing this blog helps that, too. I had to wait until I was at this mental stage to get a little perspective. I'm at the point now that I can honestly say I am ready for whatever comes next. If I can get through all this crap and crud and slimy mess, so can anyone else. I'm sure of that. I can look back now and see it all and see how messy and ugly and mean and rude I was, and how the situation was too. Don't get me wrong, what I am writing in the blog is all true. I'm not making any of it up nor am I adding things to make it more funny or anything... I am just leaving the emotional things a little closer to the door. I'm going to start adding more of the emotional component into the blogs from here on out, too. Emotions are just as much a part of things as the rest. I just seem to want to shy away from them because they can hurt and cause tears and I feel we have had enough of those for a lifetime plus.In conclusion, I hope that this entry doesn't scare you off from the rest of the blog entries that I put up down the road. I just don't want to hold anything back. If I do it isn't fair to you who are reading this. If this is going to reach someone or help them at all, it needs to be real and honest.

Thank you for being here and reading along. I will talk with you again next post.

4 comments:

Anonymous
said...

Brian, Thank you for sharing this. It makes me wonder if perhaps I have not been empathetic enough with what my husband has been experiencing. Anyone who is going through EC is a hero. I know my husband has gone through this for his family, especially his young sons. God Bless you and yours. --B.C.

BC - It is exceedingly difficult to be empathetic without having a common frame of reference... Plus, since every journey is as different as the people that are in them, there is no 100% common place to look at them... I am sure you are doing fine, and I would assume your husband would agree. I agree that everyone that goes through EC (or any major illness for that matter) is a hero... However, that also includes those who watch and support... the Watchers I like to call them. It changes everyone in some form or another. Just stay strong, be positive and do what you can for your husband but also for YOU... Lea Ann learned that and it helped me in the long run see how much of an ass I was being and how I needed to change that part of my journey. I'm still learning. It becomes, as they have said before, the "new normal" and that can take some time to get used to. Keep on keeping on... And I am sure you will. :)

I lost my husband a year ago last January to dc. Treated at the U. Of Chicago would not operate and he chose no second opinion I did all the research, he did none. That was his typical attitude through the whole journey. We all suffered because of this. He closed up even more than he always had been. Nothing touched him. He was NED for two years. When he was told it became back. He never asked for any specifics just went like a lamb to more chemo. As it turned out, the chemo caused his ultimate death. He couldn't do the chemo and the drs well let's say, well nothing. It was sad and the only time he asked what to do was when it was too late. Figures. Caregivers suffer also. He's at peace now and his abusive behavior affect me no more.

I don't know what to say to this particular issue. I'm sorry you and your family had to go through this. The beast knows no bounds, and sometimes the person that is diagnosed has no idea how to handle it,so they shut down, turn into themselves and just get lost. That is what sounds like happened here. It is a sad and very hard place to be for everyone. No one should have to go through this alone, but ultimately we have to abide by the decision the diagnosed makes. Definitely the caregivers suffer too. Everyone does. Ripples in a pond reach every corner and every shallow. I am sorry to hear of the abusive behavior... I went through a time of that as well. But I was madder at myself than at anyone else. Just the only outlet there was was to lash out at those trying to help. I wish there was more I could say or do... All I can offer is prayer and good thoughts. I am sure you and yours did all you could and withstood it all...

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About Me

Major Star Trek fan, sci-fi fan, sports fan (mainly football, baseball and basketball), astronomy fan, science fan, Esophageal, Thyroid and Kidney Cancer survivor. All-around goofball. Father to seven (with 2 sets of twins) and four grand kids. Married to my best friend. Born and raised in Missouri, living in the Midwest.